Caregiving While Disabled

Finding balance when you have a disability and also provide care

Nicole Hughes has found herself in many places, including on the floor with her care recipient. Hughes (whose name has been changed for privacy) is a state-mediated care worker, artist, and disability activist. They are not only disabled but also care for others with disabilities.

“That is a really interesting moment of professional and personal intimacy where you’re sitting on the floor with someone — and maybe you both really want to stand up — but neither of you can in that moment,” Hughes says. Hughes,who uses they/them pronouns, cares part time foranother artist and disability activist in Chicago’s Hermosa neighborhood who has multiple disabilities and chronic illnesses.

“Those are difficult moments,” Hughes says. “But I think that they can also be joyful moments. They can be humorous moments. That’s just the reality of sometimes working as someone who has a disability or identifies as disabled as a caregiver.”

“For many, unpaid family caregiving isn’t a choice, but a necessity.”

Hughes — who has narcolepsy with cataplexy, a neurological disability, and identifies as autistic — is among 18% of caregivers who are disabled themselves, according to a 2025 report on caregiving in the United States by AARP and the National Alliance for Caregiving.

These statistics don’t surprise Courtney Hedderman, senior associate state director of advocacy and outreach for AARP Illinois. She says it comes down to more people caring for each other than ever before. The nation’s aging population also faces an increased risk of injury and chronic disease. “Caregivers are really all genres, genders, populations, and ages,” Hedderman says.

She recalls one couple at a recent AARP event. An older man with poor vision relied on his wife’s shoulder to guide him as he walked, though she used a walker.

Hughes and their client, for example, can both stand and sit independently most of the time. Their hours and tasks fluctuate based on what Hughes can do at any given time, which requires ongoing, honest conversations — something Hughes established before taking on the role.

“I think being a caregiver is something that I would always want to be involved in, in the same way that I hope when in moments I need community care, there will be people who provide it for me,” Hughes says.

For many, unpaid family caregiving isn’t a choice, but a necessity. According to the report, 30% of family caregivers have a household income of less than $50,000. Yet it would take an estimated $96 billion to $182 billion annually for the U.S. health system to cover unpaid family caregiving, according to a recent study in the journal Innovation in Aging.

Often, caregivers aren’t supported by the health system they uphold. Among family caregivers with disabilities, 8% lack health insurance themselves. Many also don’t practice self-care, which can put them in their own “precarious situation health-wise,” Hedderman says.

Hedderman says she often sees this pattern in the senior population. Caregivers tend to get as sick or sicker than the person they’re caring for. “It is so much effort, so much stress, and so much [of] their own livelihood. They don’t [always] care for themselves very well,” she says.

Ideally, taking steps to stay as healthy as possible means caregivers can support their recipients for longer.

A range of services and tools exists in Illinois for people in situations like Hughes and their client. Area Agencies on Aging connect people to support organizations such as Access Living, a Chicago-based nonprofit that offers services for people with disabilities; or the Illinois Assistive Technology Program, which provides long-term loans for medical and daily living equipment — from wheelchairs to tablets — to support in-home care and communication.

However, to access services like these, the caregiver must recognize the need for self-care and ask for help. Here are some steps caregivers can take to do exactly that:

Self-identify as a caregiver. Many unpaid caregivers don’t consider themselves caregivers, Hedderman says. They might not think they need or deserve help to care for loved ones, which means they miss out on available resources and support systems.

Ask for help. Support exists at local and state levels but is underutilized, Hedderman says. Some care recipients insist that their primary caregiver handle everything, but the grind of caregiving makes it hard to recognize when it’s time to ask for help. AARP’s Prepare to Care guide offers tips and support for caregivers at any stage of their journey.

Build a caregiving team. Creating a team of friends and family ensures the caregiver is never truly alone in caring for someone, including themselves, Hedderman says.

Carve out time to find balance. Even if it means waking up early or staying up after your care recipient to take a walk around the block or read, creating self-care moments can make a significant long-term impact, Hedderman says.

Access respite support. Using your support network or professional respite services allows caregivers to take breaks for errands, medical appointments, or simply to rest and recharge.